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Mari

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Mari last won the day on October 4

Mari had the most liked content!

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  • WAG cape town - ant

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  • Gender
    Female
  • Interests
    genetics and genetic genealogy, reading, gardening, wood carving

    DQ6/DQ8 Diagnosed 2006
  • Location
    Northern California

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  1. I agree with starrytrekchick, it's good to be tested. Remember that the usual tests can miss up to 30% of people who have celiac disease. I had confusing blood tests - elevated anti gliadin but normal anti tissue transglutaminase. I ordered the genetic marker (DNA) test which showed a main celiac gene and a gene for Leaky Gut Syndrome. I was at high risk for developing gluten problems and had the symptoms. Be sure the gastro also tests you for Lyme Disease.

  2. I usually eat foods I prepare myself but sometimes when I eat commercially prepared food I notice an unpleasant body odor. Although the liver usually removes toxins and pollutants, some of these are removed in the body fluids by sulfur containing amino acids and are sweated out by the sweat glands. I can usually tell if I've eaten a toxin - the next day, I can smell it. Eating asparagus, artichokes, garlic which contain these sulfur amino acids helps to get out the toxins. Epsom Salts sweat baths are good, too.

  3. Pale stools are often an indication that not enough bile from the liver is being squirted in tho the food you have eaten. Biliary congestion is common in people with Celiac Disease, usually because the system is clogged with gallstones, bile sludge and parasites. In my experiences it can also be caused by inflammation of the small intestine, swelling the bile and pancreatic ducts closed. In reading messages some people's congestion clears up as they heal and the inflammation is reduced. Sufficient bile will color the stool dark brown. Others will eventually become completely clogged and Drs may advise to having the gallbladder removed. Instead of surgery I chose to flush out the congestion using Gallbladder/Liver Flushes and doing herbal Parasite killing programs and, adding fiber to meals which is known to increase bile production in the liver.

  4. I had a transient ischemic attack (TIA) - a small transcient stroke recently and went thru all sorts of expensive tests which showed no problems. When I was younger I would get dizzy if I stool up too fast. Since the Drs didn't figure out the cause I went to an alternative medicine book and read there that the TIA could have been caused by an overload of mold toxins in my body. Mold toxins are neurotoxins and can affect many systems so thought you might want to read some of the websites. I searched for 'mold toxins blood pressure and came up with lots of sites. Here's one:

    Symptoms | Mold Toxin Doctor

    Call us today 949-458-6728. We can help you! ... are as many as 200 symptoms which may affect different parts of the body. Yet, mold ... Abnormal Blood Pressure (low or high ...

    www.moldtoxindoc.com/mold-toxin-and-illness/symptoms.php

  5. It is sad that you had to deal with ill health for your growing years but it is wonderful that you have the courage and intelligence to start figuring out what your problems are. Don't be discouraged if the gluten tests come back negative or inconclusive because they are not completely accurate and there are other problems which can be cured or improved and you will figure it out. Before going gluten free I felt that I had not had a happy moment in my life but as I've healed I can now recall some happy moments, it was the continual depression leaving me so negative.

    Although eating gluten is necessary for the tests you could start eliminating some foods such as cow's milk,corn, soy which may be causing some problems. Some years age I took large amounts of turmeric which lifted my depression (see recipes online) - it's an anti inflammatory herb/spice and it also won't allow some toxin producing enteric bacteria to grow in you and it is these toxins which can cause depression. Other messages can advise you on vitamins and supplements. Also read some of the messages on opoid withdrawal - both gluten and casein have opoids and are addictive.

  6. Before perscribing Fosamax Drs are advised to rule out Celiac Disease. Studies have shown that it is ineffective for gluten related osteoporosis and many celiacs have reactions when they take it. Yet many Drs are still perscribing Fosamax and related meds. My Dr wanted me to take this so I told her it was not indicated, well she didn't believe me but finally she looked it up and by golly I was right.

  7. DQA1*0301, 0501

    DQB1*0201, 0302

    The Wikipedia articles on HLA-DQ, HLA-DQ2 and HLA-DQ8 are quite good. The DQB alleles are the most significant for celiac disease. Using the molecular serology terminology you are a DQ2 (0201) and DQ8 (0302). The DQ8 is a subcategory of DQ3.

    My DNA analysid (DQA not done) DQB1 0302 and 602. We share the same main celiac allele, 0302 so we are both DQ8. My 0602 allele is a subcategory of DQ1, DQ6.

  8. Recently Wikipedia has added information about the HLA-DQ . Look at HLA-DQ for an overview then look at HLA-DQ1 and HLA-DQ2.

    Did she have the molecular analysis of the DNA alleles or did she have the serology test for the celiac antibody binding site on the antigen receptor cell? Could you write down the results as shown exactly on the report. What you wrote seems to shows one DQA result and one DQB result instead of 2 results - the other set of DQA and DQB are missing.

    We inherit one DQA (allele) and one DQB (allele) from each parent. So if both the A allele and the B allele were tested then there should be 4 results. Some labs test only the two HLA DQ B alleles (Enterolab.com).

  9. Since it was such a small amount of gluten, my experience is that the symptoms clear up in a day or two so it is possible that something else is also going on. The most likely is that the hamburger contained a bacteria which caused the intestinal upset. Meat, and especially hamburger, must be cooked for at least 20 min to kill off bacteria and parasites. These enteric organisms may not show up on a stool culture or exam but even in small numbers they can produce enough toxins to cause symptoms. If the reaction was within an hour or so the toxin probably was in the food or you had an allergic reaction. This should have cleared up by now. Drs can treat the toxin producing organisms but first they have to identify the organism responsible. There are some herbs which might help clear this up. I have used turmeric (recipies online), human safe iodine solution, added probiotics to my diet, taken betaine-Cl to increase stomach acids.

  10. I have had to cope with constipation for years and tho magnesium laxatives helped I found that herbal laxatives did the job - Cascara sangrada or Senna. magnesium laxatives only work in the large intestine while herbal laxatives are better at clearing out the small intestine. A normal person will have the urge to have a bowel movement within an hour after eating. This is because when we eat we immediately produce lots of hydrochloric acid in the stomach to liquify the food and this high acidity also triggers a valve between the small and large intestine to release digested food into the bowel. Increasing the stomach acids by using Betaine HCl with meals or hydrochloric acid drops with meals can help this problem. I also eat grapefruit after eating foods with fats or oils which also helps. And I eat lots of prunes which provide fiber and stimulates bowel movements. You may not be eating enough fiber - I've used gluten-free oat bran, flax seed meal tho many use rice bran with meals. I found some websites which show the amount of fiber in foods and try to get most grom my diet. Eating too much fat or oils also clogs up the intestine if you not able to adsorb it, it makes the intestinal contents very sticky.

  11. About 4 years ago I remember seeing messages from 2 people who had your combination of autoimmune problems.

    I searched for 'hemochromatosis celiac' - sone of the websites

    Celiac Disease and Liver Disorders

    Case histories show that iron overload and diagnosis of hereditary hemochromatosis often follows successful celiac treatment. Also, British patients with celiac disease showed a ...

    www.celiac.com/articles/21501/1/Celiac-Disease-and-Liver-Disorders/Page1.html

  12. One way to see if you can tolerate the supplements you bought would to put a small amount under your tongue. If no reaction add a little more each day until you can tolerate the whole dose.

    Muscle testing (applied reflexology) can be useful. Maybe you can find somebody to teach you how to do this. I use this sometimes before buying a supplement or prepared food.

  13. Recently I've been getting Vit b12 injections and have had a great improvement in intestinal problems. Usually Drs look at the size or volume of the red blood cells to have an idea of whether a person is deficient in B12 or folic acid. I read an article recently which showed that a B12 deficiency does not show enlarged rbcs for some time after the person becomes deficient and so early B12 and folic acid testing of people with celiac disease is necessary.

  14. Long before I went gluten-free I found that using loads of turmeric helped the kind of depression you described. I took capsules, make a paste and spread it on different foods, there are lots of recipes online for theraputic use. Later I started taking iodine drops after meals. These remedies both work if the depression is being caused by enteric bacteria producing toxins which cause depression.

  15. Hi loey,

    I've been criticized for posting about some of the alternative methods which I have used and found helpful over the many years before being diagnosed with celiac disease. I did not try to treat by using one thing or another, instead was lucky to find a program which brought me back to being able to work and support myself. Along the way I learned how my digestive system functions and several ways of improving that function and my general health. Now that I'm gluten-free the programs are much more effective. Doing alternative self treatments required me to let loose of my strong predujice against alternative medicine while keeping my good sense and being able to make good judgements about using what was advised. I followed the instructions carefully and waited until my body felt it could go on to the next program. The results were rewarding.

    In my 40's I applied for UI and got back a terrible letter accusing me of dishonesty from the supervisor of the UI office, he would not even file the application. My advice is for you to consult a lawyer or other expert in UI before applying so that you learn what your rights are and can make an effective arguement. But keep in mind that if you can learn to improve your own health you will be able to go back to work.

  16. I've been using the SCD for about 2 years and it has been helpful. The book gave me a better understanding of the problems as I have both celiac disease and Leaky Gut Syndrome. I can add a few of the grains for a short time but then begin reacting again. People who suspect or know they have gall stones or bile insufficiency are warned not to use stevia. I don't tolerate goat's milk very well so only use kefir occasionally for the probiotics. I can tolerate sprouted quinona and am going to try out sprouted grains sometime.

  17. By the time I was diagnosed at age 70 I had obvious sprue and in the last 5 years gluten-free the sprue has at times gotten better but it always returns. This may be due to inadvertant glutening but sometimes I cannot figure out the source of the contamination. The general health of my digestive system seems to be partly responsible, for when I get bacterial and yeast overgrowths the sprue increases. When my liver is not producing sufficient bile or when a bacterial overgrowth is metablolizing my bile the sprue increases. A sufficient supply of bile is necessary to emulsify fats and oils so they can be digested and prepared for adsorbtion. In fact, it takes good chewing ability, sufficient stomach acids bile, and the secretion of adequate pancreatic enzymes to prepare fats/oils to be adsorbed. It is also important to not eat poly-saturated oils and fats because our bodies cannot use them. Tropical Sprue is caused by people in warm climates eating oils which have become saturated in the heat and these oils cling to the intestinal wall, hindering adsorbtion of fats and nutrients. I've seen no studies it may be best to protect ourselves from this build up of undaturated fats on an already damaged small intestion. Refrigerating food oils and not cooking olive oil at high temperatures are 2 ways to help preserve the unsaturated oils.

    I think that genetics is important, not only the HLA-DQ gene with it's 2 alleles (one from each parent) but all of the 14 genes associated with gluten sensitivity. Most of us have different combinations of all these 14 genes. Now that the scientists have been able to describe the gene products of the DQ gene they are studying the closely associated HLA-DR and HLA-B genes which may deepen the understanding of gluten sensitivity. The various combinations of DQ alleles leads to different level of gluten fragment binding that affects the severity of the problem and the risk of getting the problem.

  18. It sure seems that something about gluten is causing problems so it is either more tests or just staying gluten free and having modified french toast - Udi's brand bread would probably do ok in soaking up the eggs and it tastes good too. Until you make up your mind about what to do next it will probably help to go on a low carb diet, take a supplement to make your stomach more acid (I use Betaine-HCl) and take digestive enzymes. This will starve the gut bacteria or yeasts which are producing the gas and bloating and digest the food eaten before the bacteria can grow in it. Check out the Gluten Syndrome website for more information about the problems gluten can cause. I had the genetic marker analysis at Enterolab.com - they offer other tests too. Prometheus Labs also can test your predisposition (risk) for developing Celiac Disease and non-celiac sprue. Metametrix Labs can test for any organisms which could be causing your problems and also for some intestinal dysfunctions, including a sensitive test for gluten antibodies.

    Hope this helps.

  19. Final Laboratory Report Date: 11/9/2010

    A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

    HLA-DQB1 Molecular analysis, Allele 1 0301

    HLA-DQB1 Molecular analysis, Allele 2 0604

    Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6)

    My test from ELab were similar

    Allele 1 0302 (HLA-DQ8) Yours was DQ7. This is a subtype of DQ3

    Allele 2 0602 (HLA-DQ6) Yours was DQ6. This is a subtupe of DQ1

    One difference between you and me is that the O302 is a main Celiac gene so I was at greater risk of developing the autoimmune problem. The 0602 put me at risk for developing non-celiac sprue also called Leaky Gut Syndrome.

    This is confusing - the serology test was developed more than 20 years ago and became the usual way of reporting. The molecular analysis of the gene was developed years later then correlated with the serology test.

    Wikipedia has clear discussions of the HLA-DQ s

    Look at HLA-DQ first to get the overview.

    HLA-DQ - Wikipedia, the free encyclopedia

    HLA-DQ (DQ) is a cell surface receptor type protein found on antigen presenting cells. DQ is an αβ heterodimer of the MHC Class II type. The α and β chains are encoded by HLA-DQA1 ...

    en.wikipedia.org/wiki/HLA-DQ

    Then look at the individual DQ groups and subgroups.

    Here's the link to DQ7

    HLA-DQ7 - Wikipedia, the free encyclopedia

    Serology

  20. I also use strong mint tea. It is the intestinal bacteria causing the gas and bloating so you might try starving them by reducing the amount of carbohydrates in the diet, especially the grains and potatoes. I have found taking the spice turmeric (see recipes online) helps with irritability. If this continues you might ask your Dr to do some tests to identify the the organisms causing problems in your intestine.

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